Cancer is nothing when you have hope!! This site is all about living … and living well … with late-stage cancer. I hope you will journey along with me through the ups and downs of living with lung cancer.

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Mutation testing is a subject near and dear to my heart. I can’t say how many people I have met who have lung cancer but know nothing about genetic testing. As a matter of fact, not so long ago, I didn’t know much about it either. (And, to tell you the truth, I’m still far from an expert. But, I know enough to tell you that the testing is very important and it can be a life or death test.)

So, What is Mutation Testing?

Mutation testing has a bunch of different names: molecular profiling, molecular tumor testing, biomarker testing, genomic testing, testing for gene mutations, genetic testing, genetic mutation testing, and more. It can be very confusing, for sure. But, here’s what you need to know – if you have lung cancer, especially nonsmall cell lung cancer (NSCLC), you are doing yourself a big favor if you ask your oncologist to get mutation testing, by whatever name, done.

Why is mutation testing important? Our cancer is unique to us. Each tumor cell is made up of specific proteins and molecules. According to American Cancer Society, normal cells do not have mutations, cancer cells do. Genetic testing allows doctors (pathologists) to take a detailed look at tissue from your tumor to see what mutations exist in its DNA and exactly what proteins are present.

How is Mutation Testing Done? Does It Hurt?

No. Or, it doesn’t hurt if you have tissue available from your previous biopsy. The pathologist will just use some of that tissue to do further tests.

If you do not have enough tissue left from your biopsy or the tissue is old, it will be necessary to get more tissue. Depending on where the tumors are located, the procedure could be simple or a bit more involved. I had a tumor on my supraclavicle lymph node (collarbone) so it was very simple to take tissue from it for further testing.

Why is It Important to Have My Tumor Tested?

Your tumor was already tested to a certain degree. The pathologist took the tissue from your biopsy and used it to determine what kind of cancer you have. If you have nonsmall cell lung cancer (NSCLC), then the pathologist looks at the tumor a little closer to determine what subtype it is. Generally, you will learn that you have adenocarcinoma (about 40% of NSCLC cases) or squamous cell (epidermoid) carcinoma (25-30% of NSCLC cases), but you may have one of the less common types, large cell (undifferentiated) carcinoma, adenosquamous carcinoma, sarcomatoid carcinoma, etc..

Your oncologist uses the information from the pathologist to determine a treatment plan that will be the most effective against your tumor type. Recently, it has become more affordable to provide the oncologist with even more information about your tumor type so that he can hone your treatment plan further.

Depending on the characteristics the pathologist finds in your tumor, your oncologist may decide that there are targeted therapies or immunotherapies that likely will be most effective against your tumor(s). In (very) simple terms, targeted therapies attack just your tumors, instead of all of your cells like chemotherapy does. Immunotherapy works with your own immune system so that it can see and destroy the cancer cells.

According to Memorial Sloan Kettering Cancer Center, about 60% of adenocarcinoma lung cancers will have specific mutations. Many of these mutations may have targeted therapies or immunotherapies available to treat them.

Among the most common mutations for which there are targeted therapies are Epidermal Growth Factor Receptor (EGFR), Anaplastic Lymphoma Kinase (ALK), ROS1, and T790. Scientists are discovering more and more mutations every day and finding treatments that work effectively against them. Immunotherapy works best when there is a large amount of a protein called PD-L1 in your tumor.

I’ll take this time to make a brief plug: more, more, MORE money is needed for lung cancer research. We’re talking lives here!!!!

Take a look at the Don’t Guess Test Web site. Among the vital information you will find there, you will find a PDF that you can download and take when you see your doctor.

5th Annual LUNGevity National HOPE Summit

What is it?

I am home now from an AWESOME weekend that was spent in Washington, DC at the LUNGevity National HOPE Summit. It is held for lung cancer survivors and their caregivers every year. This year was the 5th anniversary. The event has grown from 17 survivors meeting in a small room to over 150 survivors, plus their caregivers, meeting in a large ballroom.

Lung cancer survivors who are attending for the first time are provided with the opportunity to apply for a generous grant that pays for airfare and hotel costs. Wow! What an opportunity!!

Lots of HOPE

It was fascinating being in the ballroom with so many lung cancer survivors. We spanned many years. One gorgeous young lady is only 24 … and she’s already recovered from having part of a lung removed due to lung cancer. There were way too many young people there in their 20s, 30s, 40s … and then there were some of us who were older, too. Young, old, skinny, fat … black, white, yellow, brown … cancer does not care. It attacks us all.

No matter the age, race, nationality, or religion, the group as a whole was the most cheerful, hopeful group ever. Considering we are fighting the most deadly form of cancer there is, that’s remarkable in and of itself!

LUNGevity has trademarked May as Lung Cancer HOPE Month. We are hoping to raise awareness through a “What Takes Your Breath Away?” video campaign. I don’t think it will catch on among most of my friends … I’m sorry, they just are not all that supportive of this particular fight. I don’t really know why that is the case. Regardless, I am hopeful that it will gain popularity among others so that more people will be aware that lung cancer happens to people with lungs, not just smokers. (See below)

According to the American Cancer Society publication (link above), 44% of lung cancer patients will survive one year. Only 17% are expected to survive for five years. For late-stage cancers like mine, only 26% survive a year and 4% make five years.

I am so fortunate. My traditional chemo regimen quit working about 7 months into my diagnosis. Were it not for the clinical trial I got into, I would have probably been one of the 74% who don’t survive a year. But, because of research and new technologies, specifically, immunotherapy, in my case, I am hopeful I will be in the 4% that are still alive and well five years after diagnosis.

But, I disgress … back to the Summit!

The packed room was filled with people who were quick to laugh, cheer, and tell their stories. Despite challenges, I don’t think there was anyone there who was not filled with lots of HOPE. Doctors and scientists were hopeful, too! Lung cancer research needs much, MUCH more funding, but even with limited research dollars, the scientists and doctors are making tremendous strides. It is so exciting to hear about targeted therapies that attack just the bad cells and immunotherapy that works by building up the cancer patient’s own immune system so that it can fend off the cancer. Anyone who has ever suffered through chemo knows how exciting it is that there are drugs available or coming soon that don’t send you to bed, wondering if treatment is worse than just dying from cancer.

I am sad that I didn’t take pictures at the National HOPE Summit. I was so involved in listening and chatting with others who have “been there done that,” that I never got my camera out of my purse. But, I’ve seen lots of pictures that other people took. And the smiles are infectious!!! People were having FUN all through the hotel!

Lung Cancer Awareness Campaign

So, LUNGevity is hoping the lung cancer awareness campaign will go viral. I mentioned it above, but wanted to both provide more information for those of you who might wish to participate and to post my first attempt. I decided today that I was going to try to do several. There are LOTS of things that take my breath away besides lung cancer. I’m going to try to highlight several of them. Some of my friends will probably be tempted to start blocking my Facebook posts because they are going to be tired of hearing about lung cancer. But, it is just that important to get the word out. Lung cancer is not a disease to ignore. It just isn’t.

I’d be surprised if anyone reading this blog hasn’t been impacted at some point by lung cancer … a grandparent, parent, sibling, or friend or friend’s family … lung cancer is so common that almost everyone knows someone who has or has had lung cancer.

Let’s get the word out that:

No one, absolutely NO ONE, deserves to have any kind of cancer, INCLUDING lung cancer.

Smokers are NOT the only people who get lung cancer. Young, athletic people who never smoked are being diagnosed way too frequently. Sadly, doctors are MOST likely to let their cases go on and on before diagnosis … even doctors are influenced by the old campaigns that blamed smoking alone for lung cancer.

There is HOPE!!! There is not as much as I wish there was, but there is hope. And if we could get more $$$$ directed toward lung cancer research, that hope would be multiplied many times over. It is incredible what our research community has done with such limited funding. It could grow exponentially if we could get more money to them.

My First Attempt

I tried doing a selfie video this afternoon for about an hour. I never really got anything worth publishing. I may set up my good camera on its tripod and try again tomorrow or Wednesday. In the meantime, here’s what I’ve come up with for my “What Takes My Breath Away” video: